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Genetic Testing Results (BRCA1 and BRCA2)

I got my genetic test results back. Negative for any of the genes tied to a heredity predisposition for breast cancer. Including BRCA1 and BRCA2. While that is good news and I don't need to worry about passing this on to anyone, and my family members don't necessarily need to be more vigilant. I know I am supposed to be relieved about these results, I really do understand that. So, how come I'm slightly less than thrilled?

If this cancer wasn't caused by an inherited gene, then we're back to square one. And as much as I know that "everyone who gets cancer is a unique case, with individual circumstances and different lifestyles", I still feel an incredible amount of guilt.

My doctors have informed me that they still don't know exactly what causes people to get breast cancer. Because one person who lives a textbook healthy lifestyle can get it just as easily as someone with more lax choices. My Oncologist said there has been some correlation between longterm estrogen levels and the development of breast cancer. Because I did start my menstrual cycle at an early age (11) and didn't have any live births until 36, that means I had an extended period of time where my body was estrogen heavy with no progesterone to level me out. Add in the fact that I took hormonal (albeit low hormonal dosage) birth control pills for roughly 15 years and I've definitely been estrogen heavy. I also smoked for WAY too long and my eating choices have been total crap.

So, there you have it. Cancer guilt. That's where I'm at today while I wait for the results of the latest biopsy (lymph node biopsy).

Cancer Journey: Update (3)

Pre-Mastectomy Updates:

Still have both my boobs and haven't had surgery yet. This unknown, waiting is seriously, THE. WORST. part of this whole journey. We got the results of the MRI and CT/bone scans back last week...

Negative for mastasis (the cancer hasn't spread beyond the left booby area), however, they did find a lymph node near my left arm pit that is "significantly enlarged". This could mean several things (especially considering I've been battling every cold virus known to man, that my 3 year old has been kind enough to bring home from school), but ultimately, it could mean that the cancer has spread to the nodes, which would be bad. So, naturally, I thought they would just schedule the surgery and we'd take that sucker out when we hack off the boob, right? Nope. I have to have yet another core needle biopsy this Friday to determine for sure if there is cancer in the lymph node(s). Why is this important? Because, if cancer is found in the nodes, then I will need neoadjuvant therapy. 

What is neoadjuvant therapy you ask? Good question, lesson time; most neoadjuvant treatments involve one or more chemotherapy medicines. Targeted therapy medicines, hormonal therapy, or radiation therapy also can be used as neoadjuvant treatments. Neoadjuvant therapy is not typically needed in early-stage breast cancers, but it is often necessary if the tumor is larger than 5cm and/or the cancer is aggressive and invasive. Since we already know my tumor IS larger than 5cm we're now going to determine how aggressive and invasive it is from the biopsy.  

Why hadn't we delved into this subject before? Well, because the doctors couldn't FEEL the enlarged lymph node, so they were thinking that we were just dealing with a large tumor (which is only one part of the equation when we're talking about pre-surgery chemotherapy). Since we had already determined that the size and location of my tumor meant that my breast was unlikely to be saved (via a lumpectomy procedure) we knew a mastectomy was in my future. Most of the time, a mastectomy would negate the need for chemo and radiation (IF all cancer and margins are removed). So, we weren't talking much about chemo and radiation. They did order the MRI and CT/bone scans though, just to be sure. And sure enough, suspicious lymph node activity. Damn. So that possibly changes things. 

We already had the mastectomy tentatively scheduled for January 31st, and it still is. But, that will change if the results of the biopsy show cancer present in the lymph node(s). If cancer is found in the node(s) I will likely need chemotherapy for 4-6 weeks (!!!!!) prior to the mastectomy. I'm kind of freaking out. I mean, I knew there was always a chance they would get in there during the surgery and see that the tumor was larger/deeper than they thought and/or that it had spread places. Which would mean chemo. But I was really hoping that a full mastectomy would be all that is needed to rid my body of the cancer.  I mean, that's why I'm even considering a bilateral mastectomy - I NEVER want to go through this again, just get them off me and the cancer out of me. I really didn't want chemo (can I have that pity party yet?).

So, basically, just keep the prayers and good vibes coming my way. I know we can't reverse what is already there, but I can still have hope that chemo is not part of my future. 


Cancer Journey: Update

It was another busy week, but I don't feel like I'm any more informed. Just more testing...

December 31: we got home from NYC for NYE (which is also Matt's Birthday). It was also, MRI day.

January 1: tried to have a chill, relaxing New Year's

January 2: CT Scan and Bone Scan day. What would have been an easy. painless procedure wasn't so great due to an inexperienced aide who could not find an adequate vein (which was needed for the contrast dye injection). He stabbed me FOUR times before finally giving up and calling in the IV Team. They came over with a fancy ultrasound machine to locate a vein.

January 3: met with the Plastic Surgeon and discussed my reconstruction options. So, remember, I'm losing one boob regardless. So, now I decide if I want to get rid of both and proceed with reconstruction on both. OR, do I have a mastectomy on just one boob and reconstruct it. I had so many questions but ultimately, my expectations were placed into realistic territory and I realized we're talking about reconstructed boob mounds, without nipples. Yeah, for some reason I never thought about the nip and that it too would be gone. And that the scars we're talking about aren't the tiny cosmetic ones, they are the gnarly cancer surgery ones. Of course, my nipples would be something I need to consider. A reconstructed protruding "tip" or a 3D tattoo that looks like a nipple. But it didn't really matter, nipple decisions can wait. That would be like 3 surgeries and many months away. Basically, at this point all that I need to decide is one boob or two. And tissue expanders to make room for implants or do I want tissue taken from my stomach or thigh to be used to make my mound boob? FFS!

January 4: met with the genetic counselor and proceeded with the tests to see if I have the BRCA genes.

So, where are we a week later? I don't know. I don't know much more than I knew before. I'm awaiting test results from my MRI and CT/Bone scans. We're still crossing our fingers that the cancer hasn't spread to any lymph nodes or any place really. Once we know this information we can determine if I need any pre-op treatment (chemotherapy). AND we can finally schedule the mastectomy, where honestly I don't know if I will make the decision on one or two until the last possible second.


When Cancer Came Knocking: A Breast Cancer Diagnosis Timeline

This has been quite a stressful few weeks, but at the same time everything is happening so quickly...

Early October: I felt a hard “lump” in my left breast while showering. Of course, I turned to Doctor Google, who told me not to panic. Monitor its size and texture over the course of my next menstrual cycle. Google said at my age, lumps come and go naturally, due to hormones, throughout any given cycle. So, I checked that sucker everyday, hoping it would magically vanish after my next period.

Early November: my period came and went, but my “lump” was still there. It didn’t feel at all like I imagined a lump would feel like. I always expected lumps to be small, like a small pebble and kind of squishy, like a pea. What I felt was pretty big, like maybe the size of a prune and it was HARD, like a rock. The nervous pit I had in my stomach began to be a constant feeling of panic! I called my doctor and scheduled an appointment.

November 12: I had my primary care physician exam me. She tried to be positive and give me hope, but I knew something was very wrong. She tried to calm my fears with statistics about my age and how unlikely it was to have breast cancer at 40. But she was also honest, she did NOT like how it felt. She said it didn’t feel like a cyst, but she had “been wrong before”. She ordered a diagnostic mammogram to be followed by a breast ultrasound. I left her office with an impending sense of doom.

November 21: the day before Thanksgiving, I went in for my first ever mammogram. Having never had one before (I had just turned 40 and knew I should start getting them yearly, but hadn’t yet). I was nervous, having heard how detested mammograms were. Let me assure you all, they are NOT bad at all! And they last like 1 minute, 30 seconds for each boobie. Next, I had the ultrasound. Having gone through 2 pregnancies in 3 years, I knew ultrasounds were not scary. But the ultrasound tech was taking her time and being too quiet. I knew she wasn’t allowed to tell me if she saw anything bad, but she certainly didn’t tell me she saw nothing to be concerned about. After the ultrasound, rather than sending me home, they had me wait and talk to the radiologist who was reading my results. She was very nice, but very direct. She was “worried it might be cancer” and she had actually found TWO suspicious spots on my left boob AND one on my right! She sent in my orders to have something called a core needle biopsy as soon as possible. 

Thanksgiving: I tried to hold it together and present myself as normal as possible. I didn’t want to worry my family unnecessarily. 

December 7: after what felt like an eternity, my biopsy day was here. My best friend went with me because that’s just the kind of person she is. She’s also a cancer survivor. And while she didn’t have breast cancer, she certainly understood my concerns. They biopsied my three spots. Right away the technician was able to tell me the lump in my right breast was fluid filled and thus, a cyst. That was a slight relief, but because I didn’t even know that existed before the mammogram and ultrasound I was hopeful it was nothing to worry about. Plus, Doctor Google had told me great cancer in both breasts at the same time was exceptionally rare unless the cancer had metastasized. Phew! Only had to worry about that left ta-ta. 

December 8-16: Time begins to really start dragging while I waited for my results. By this time, my Mom was worrying and telling our family members about the biopsy. Everyone sent well wishes and it seemed like everyone knew someone who found a lump that turned out to be nothing, so I would be fine. Everyone said it would be fine, but I knew something just wasn’t right. It’s Christmas time now and I’m trying to distract myself and get into the Holiday spirit. Not even so much for myself, but for my boys. I have TWO BABIES at home, I can’t let them see me upset. Tick, tick, tick, I waited and waited and waited. 

December 17: it was 6:20 in the morning when my doctor left me a voicemail. Now, I really knew. If it was good news, she would’ve told me so on the voicemail. I tried to brace myself for what was about to come, and I called her back. The words I knew I would hear was still crushing to hear, CANCER. I had fucking breast cancer. She didn’t know much about prognosis or stage or anything like that. Which just made me more nervous. She said she was going to pass me over to the cancer specialists now, because we had to move quickly. 

December 19: Matt and I have our first meeting with a Breast Surgeon Oncologist. He was awesome and I felt confident being in his care, but I was completely overwhelmed. Our heads are spinning and I can’t wrap my head around all the information I was receiving. Thankfully, Matt was better able to ask appropriate questions. I just wanted someone to tell me how bad it was. Did I have 6 months? 10 years? Was it treatable? Curable?!

December 21: Matt and I meet the Medical Oncologist who is able to give me a bit more information in terms I was somewhat used to hearing (stages and type). I have INVASIVE Ductal Carcinoma, stage 2, borderline stage 3. It wasn’t good news, but it SEEMS survivable. However, I was going to need a mastectomy. At least a full mastectomy of my left breast, the location and size of the tumor meant I wasn’t really a candidate for lumpectomy/breast saving surgery. I was gonna lose the left boob regardless, so it is up to me if I want to have the right one removed as a preventative method. I mean, I am only 40, I do not want to have this again in my right boob 10 years from now. Right now, I’m leaning towards a full double mastectomy with reconstruction. 

December 22-26: it’s Christmas. I try to have a fun, family Christmas.

December 27-30: Matt and I fly to NYC and try to enjoy ourselves on our well deserved adult-only vacation. 

Tomorrow we have an MRI scheduled. The results will give us a clearer picture of lymphatic activity. If the cancer hasn’t spread to the lymph nodes my treatment plan will be easier. Until we get the results, we are just speculating our plans. We won’t know if I need chemo and/or radiation prior to surgery until we get the results. 

So, folks, that’s where we are. I will definitely always remember the Holiday season of 2018.